I hope y’all had a good Monday! Like most people, I am not a Monday person. I think it must be the longest day of the entire week! But on a positive note I did get some good news today about the new medication I am going to be starting. I am very surprised it didn’t take longer but insurance has approved the Tecfidera. Even better than that I talked to someone with financial assistance with the Biogen company and my co-pay went from $100 to $0! Now I can’t start Tecfidera until early September after my next blood test to make sure my blood count is normal but so far, things are moving in the right direction. I only hope this medication will be a success!
On a less positive note after working 8 1/2 hours today my pain has become a little more intense in my right shoulder through my fingertips. Plus. I was beyond exhausted all day and couldn’t wait for my day to be over! But I guess my system will get use to the new treatment plan and things will level out over time. I do believe there is something to a positive mind will create positive things in life, so I am being very optimistic about everything! With everything that MS has thrown at me over 16 years, I still say I am never going to allow this disease to defeat me! It will get me down at times but I will stand back up and continue the fight! For all of you battling MS or any other difficult issues, stay strong and you will accomplish more than you think!
Just out of curiosity has anyone been on Tecfidera? Did you have any horrible side effects? Also, how many of you have experienced a Pseudo Relapse and my goodness how long did it last? I appreciate your continued support and really love all your feedback. I hope you have a wonderful evening!
Another weekend has come and gone by way too fast! Sunday comes up on us so quickly and it is time to prepare for yet another long work week. I did my best this weekend to relax and do what I was told when at my doctor’s office last week to help the Pseudo Relapse come to an end. Unfortunately, I am still experiencing an incredible amount of pain. I guess it is going to take a little longer than one weekend to get back to normal. Even though I am still struggling, I am very hopeful that my new treatment plan will help get all my pain under control.
I got to thinking about something over the weekend. I have always been the type of person to get up early, even on the weekends when I can sleep in. I thought it was because all week-long I have to get up early for work so maybe my mind and body is just trained to always get up early. Who knows!? I have noticed no matter what day of the week it is, I do always feel much better earlier in the day and feel so fatigued in the afternoon. It seems that everyday I feel fatigue setting in around 1 or 2 pm. Of course Monday through Friday I do not get out of work until 5:00 pm, so the last few hours of my day are brutal. I never make any plans after work so that I am able to just go straight home and rest. Of course I was curious to find out if this was something to do with the Multiple Sclerosis or just my body chemistry. Come to find out after reading this article “Fatigue and Multiple Sclerosis”, I found that 75-95% of MS patients do experience a lot of fatigue.The article https://my.clevelandclinic.org/health/articles/fatigue-in-multiple-sclerosis was very interesting to me. Please let me know if you find this at all helpful!
I know fatigue doesn’t just affect those of us with MS and everyone has different reasons for it. But for those of you that battle MS, how many of you experience fatigue on a daily basis? How do you combat this issue? I would love to hear anything that has maybe helped you in any way. It is obviously a little frustrating when I am at work and just want to close my eyes around lunch time. As always your comments are very appreciated. I love hearing from all of you and will respond to you as soon as I can. Your continued support is valuable to me as well! Being able to connect with you is so helpful to me as I hope it is helpful to you as well. I hope you have a great evening!
What does it mean to be inspired? The definition of inspire is: fill with the urge or ability to do or feel something. We all come across someone in our lifetime that truly inspires us but how often do we actually talk about it or really strive to be more like that person or persons? There have been several people in my life, such as Grandparents, that have inspired me through their values and morals to be a better more compassionate and understanding person. But there is one person specifically that has had a huge impact on my own abilities to overcome challenging times with the Multiple Sclerosis with his pure determination to conquer a terrible injury, beat all the odds and be able to continue to do what he loves to do.
Scotty Cranmer is a Pro BMX rider that is tied with the late Dave Mirra for the most X-Games Park metals. Over the fourteen appearances in the X-Games, he managed to get three gold, three silver and three bronze metals. On October 12, 2016 in Las Vegas NV, Scotty and his Monster Energy Teammates were filming a session when he caught his front wheel in a pot hole that was covered by grass, so it was unseen by all with him. Scotty didn’t even have the time to put his hands out to protect himself and ended up taking this fall directly to his face and head. Scotty did have on a helmet on as he always does but still suffered several facial fractures, cerebral hemorrhage and damage to his C4 and C5 vertebrae. If you are interested in more details about this place check out this website it is pretty fascinating. https://road2recovery.com/cause-view/scotty-cranmer
Let me explain why I say Scotty Cranmer inspires me. He spent four months in the hospital not knowing what his future held for him. My husband and I have watched his daily YouTube videos for years of him riding his bike doing incredible tricks with his crew of friends. Progressing with BMX has been his livelihood. BMX has been part of his life since he was a child when he started off racing. He went from being able to walk and ride his bike his entire life to being in a wheelchair for several months. I can’t even imagine how difficult this must have been for him. This man fought so hard and continues to fight to improve his condition. He has amazing support from his wonderful family and friends which has helped him tremendously.
As we continue to follow Scotty’s progression, he has proven to me that pure determination and a positive outlook goes along way! Scotty went from basically bound to a wheelchair to walking with the assistance of a walker to now he is able to walk without the walker, although does still use the walker for longer distances. We actually were able to watch him the other day get on his bike with minimal assistance and pedal his bike around his bike shop.
Like anyone else would, I get very down and discouraged when my pain gets so bad that it hurts to walk. But then I look at all Scotty has been through and all he has accomplished and I say to myself, “You are strong, you can get through this.” I completely understand our situations couldn’t be more different but if I can keep myself in a determined and strong state of mind I can get through anything this disease throws my way. I can and will continue to do what I enjoy without allowing the MS to control me as I will control it. Scotty has refused to give up his fight where as a lot of people probably would have allowed depression to take over and just given up all hope. Scotty wants to walk without assistance, play the songs he loves on his piano, walk his beloved dogs and ride his bike with his friends.
Life is all about choices. We can choose to fight and succeed or we can just give into the difficult times. Do you have someone who you really admire and get inspiration from? I would love to hear about who this is and what they have done to inspire you! Are you trying to follow this person’s lead? I really appreciate and love reading your comments. I do always respond to them as soon as I can! I hope the rest of your weekend is wonderful!
Happy Friday Eve! As y’all know I have been battling increased pain for about two weeks now! As you probably know from your own experience, dealing with pain is extremely frustrating! I was terrified to tell my doctor about it because I was thinking it was a flare up. I finally shared my issues with my doctor and of course she wanted to see me so she could determine what we needed to do. I scheduled an appointment with her Nurse Practitioner (NP) because she was of course booked.
I was of course nervous about the appointment because I was thinking worse case scenario. I had my husband come with me to my appointment yesterday and was actually pleasantly surprised that I was not having a relapse from the Multiple Sclerosis! The NP told me I was experiencing a Pseudo Relapse. In the 16 years I have battled MS, I have never heard of such a thing. The way she explained it to us made a lot of sense and made me feel so much better about my situation. Pseudo Relapses can occur because of infection, heat and or stress but will go away without having to deal with steroids. It is common for Pseudo Relapses to have all old symptoms from previous relapses to come back at the same time and for it to feel like you are having a typical flare up when in fact you aren’t. When you have a relapse from MS you experience new symptoms and everything I was dealing with I had been through before. I was very relived by her diagnosis and obviously feel better about the situation and I am hopeful that my pain will get better sooner than later.
During this appointment I also told the NP that I had discontinued the Gilenya about a week and a half ago. I explained to her that I felt that I had been on Gilenya for too long and my body needed a break. She told me I of course need to have a plan to what I am going to switch to. I made the decision to switch to Tecfidera. She explained that Tecfidera isn’t as strong as Gilenya and might not be as effective so I need to be prepared. I am going to try this new medication in conjunction with managing my stress better with hopes it will work. I will not be starting Tecfidera for a few more weeks as I have to wait for insurance to approve it and for my blood count to stabilize.
These past few weeks have been very difficult and extremely frustrating as I could not figure out why I was in so much pain and why it would not let up. I have been sharing this struggle with all of you and received some really great advice. I am so happy to share this great news with all of you that it doesn’t appear that my MS is progressing but remaining fairly stable. I have known that heat and stress can cause issues for MS but never did I know anything about Pseudo Relapse. You know I always end my posts with a question because I really enjoy and appreciate your feedback. Have any of you heard of Pseudo Relapses before now?
I will of course keep you all updated on how this issue improves as I do believe it will. Plus, I will be waiting for the insurance to approve the new medication and my blood work to stabilize and will keep you updated through this process. Y’all know it takes insurance a while to approve medications, especially the expensive medications needed for MS. Time will tell and I will stay positive and strong!
No one really knows what you are going through in life, unless they themselves have experienced it firsthand. There is a difference between empathy and sympathy. Empathy is having the ability to understand and share the feelings of another. Whereas, sympathy is feelings of pity and sorrow for someone else’s misfortune. We all have probably experienced both of these at one point in our life.
Most people do not really understand the complications living with a chronic illness can cause. It is both important and extremely difficult to explain to others the trials and tribulations I go through pretty much on a daily basis. It took me years to admit that I had Multiple Sclerosis, much less talk openly about it with anyone. But now that I am comfortable talking about it and do not feel shame from the disease itself, I try to help others relate to me better.
Please tell me if I am wrong, but there can be a relatibility issue among our peers. Some people I have known over the years have either confused Multiple Sclerosis with Muscular Dystrophy or actually thought it was contagious. So many people have asked, “Why don’t you just have surgery?” or suggested in not so many words that there must be something I am doing wrong. My favorite line is, “Well, you don’t look sick. It must be something else.” Part of this is because most days I try to mask any pain I am experiencing, I always try to push forward with life. I have come to understand that many people just do not know about the disease, which takes me back to relatiability. Those who are not aware of what I go through, have no way of being able to relate to me at all. Communication is key in all aspects of life which include being able to explain how I am feeling.
My family and friends have a pretty good understanding of what I go through. My husband, Jon, always understands me and supports all my decisions regarding my condition. I have had him come with me to doctors appointments so he can hear firsthand what the doctor is explaining. I know decisions about medications and what I choose to do moving forward are ultimately my choice but I feel like my decisions can affect him as well. My mother and stepfather as well as my in-laws are very supportive. They all understand if I have to delay a family gathering or miss it all together because of the pain I am in at that time. Our friends when we go on snowboarding trips, understand that I need to take frequent breaks so I do not cause my pain to worsen or get to fatigued from all the extra activity. Even my job understands when I am in too much pain and need to go home early or miss an entire day so that I can rest. All of this understanding is because of how much I have communicated with each and every one of them.
Of course there are always those questions some people will ask that bother me. I was asked the other day if there was some kind of time line as to when I would progress further and possibly not be able to do the things I currently do. Now, I can not fault the person that asked me this as she doesn’t know anything about the disease and she doesn’t really know about my situation, all she knows is sometimes I go home early from work or I am not there at all. Although I was brief, I took this time to try to educate her on the disease. In the grand scheme of things most questions will not upset me too much. But questions about my continued abilities will more often than not bother me. When people think that I am not going to continue with my normal activities much longer it takes a toll on me. I am pretty stubborn and will continue to push myself so that I can live a normal life!
As always I want to ask you just a few questions. I read and appreciate all your comments and always respond to them as soon as I can. How do you handle explaining your disease to others? How do you handle answering the questions that are a little upsetting? I hope you enjoyed reading this post and I appreciate all your support!
Happy Monday Y’a’ll! I am still currently battling the pain I have been dealing with for about a week now. For some reason it isn’t letting up. I have been resting and trying to not dwell on it, but it is still hanging around!
So what I am dealing with is spasticity in my legs and I guess that is what is going on with my neck and shoulders. I have honestly dealt with leg pain since I was first diagnosed, but this just seems like so more. All doctors will say that heat is bad for MS patients but using a heating pad is all that alleviates my leg pain. I guess I am just unusual. Does a heating pad actually help any of y’a’ll that deal with MS pain?
I am wondering if it is possible that this is something to do with the weather. I always try to find a common denominator to when my pain seems to be elevated. Do any of you believe that the weather, even when there isn’t a huge change, impacts MS? I of course already know extreme heat or cold can cause issues to worsen but the weather has been kind of the same here, hot and humid. Although today it is relatively humid and dreary.
As always I want to ask a question to all of you. Whether you battle MS, another chronic disease or none of the above, what have you noticed that causes pain to elevate or even headaches to be more frequent? I always appreciate your comments and I do respond!
Stress is something that plagues us all at one point or another. Unfortunately, no one is immune to stress. There are so many suggestions that are easily available online or in books as to what you can do to manage your stress, but what will work?
I am the type of person that will get stressed about things I logically know I can not control. My problem is, I always want to help those I care most about. When someone I care about is struggling, it affects me deeply. However, I do understand how crucial managing stress is because I know how negatively it can impact MS. Considering I can fully admit how poorly I manage my own stress, I decided to look up online ways to handle it better. Through numerous articles, I stumbled upon this one https://www.helpguide.org/articles/stress/stress-management.htm#importance. Some of the information maybe pretty obvious but it did truly open my eyes as to what I can do better.
Personally, I know what my stressors are but I tend to try to ignore them and just move forward instead of addressing the situations. It isn’t a healthy way to handle things but I do not like confrontation. Confrontation alone causes me way too much stress. My goal is to learn healthier ways to address the things in life that I know are my main stress contributors.
My ways of coping with the stress I face in life has never included unhealthy methods such as binge eating, drinking or sleeping too much. I would say the most unhealthy way I have coped is procrastinating addressing the issue and maybe from time to time taking it out on who ever is nearby. Those unhealthy methods are not common for me though. I think my best coping mechanism is reading a good book and writing. Reading helps me to relax and not dwell on whatever it is that is weighing on my mind. Of course writing allows me to get all my emotions out so I can think of a logical way to move forward!
As always I want to end this post with a question. What do you do to manage your stress? Your responses are greatly appreciated and helpful. I enjoy reading your suggestions and experiences and will always respond to you. I hope the rest of your weekend is fantastic!
Take Care, Alyssa
Happy Friday Ya’ll! I don’t know about you but it has been a very long week. I have been battling pain all week. I can’t say for sure but I think it is because I have been incredibly busy with work and fail to take breaks. I remembered earlier today that the last time I was in this much pain was in February when work was extremely busy and one person was on vacation. I thought that I had carpal tunnel because of where I was hurting. I talked to my neurologist about it and he thought it was a definite possibility so he scheduled me to be tested. I know that it was a good thing that the test was negative but then the alternative was even more disturbing to me. He told me that if it wasn’t carpal tunnel then it could be something active with my MS. He did schedule an MRI which showed lesions on my neck. The lesions on my neck were what was contributing to the pain I was going through. Finally after being on steroids for over a month the pain started to get better.
Now that the weekend is finally here, I am sure the pain will lessen because I will be able to rest! I know that I need to learn to take necessary breaks while at work so the pain doesn’t triple by Wednesday. I have a high work ethic and want to succeed in everything I do but I do understand that I won’t be successful in anything if I allow myself to get run down.
So this weekend I am going to focus on myself, which I am not good at doing. I finished my book, “The Guardian”, last night. I highly recommend this book because it was a fantastic love story but also had a great deal of suspense! I also want to work on my next post that is about something that is one of my biggest faults, stress! Oh and I am going to start on my next book, “Forgotten Child” by Kitty Neale. Kitty Neale is an author from London.
I hope you have a great weekend! Enjoy each day to the fullest and remember to tell those you hold dear how much you appreciate them. A little bit of appreciation goes along way!
Take Care, Alyssa
Happy Hump Day Everyone! It has been a relatively challenging week for me. I have been struggling with constant pain for several days now. As I said on Monday considering nothing really seems to be alleviating my pain, I am going to do somethings that I love to do so I can try to ignore the pain. A few things I love to do is to read my book and write! I have a confession to make, I love Nicholas Sparks and have read at least 20 of his books!
I think maybe trying to cope with constant pain makes the days go by so much slower. I was at work for a little more than 8 hours today and it honestly felt like I was there for days! It is amazing how when you are trying to get comfortable at your desk at work in a lot of pain that the slightest of things can aggravate you even more. But my goodness trying to not lash out at those people irritating you is almost as difficult as dealing with the pain! Please tell me if I am wrong but in those situations the best defense is to be silent, which I did pretty well today! Until I decided it was a good idea to tell my boss to stop adding additional work to my plate for now due to the increased pain and I was already extremely busy. I think I caught him off guard because I normally love the extra work.
I know most people think a lot of Nicholas Sparks’s books are very similar, which is true in some aspects but to me they all have a different meaning behind them. The book I am reading now is “The Guardian”. This book is about a woman who looses her husband and shortly after her husband passes she receives a letter and a gift from him. Of course they knew he was going to die so he was preparing for his wife to have something to help her through the sadness and loneliness after he was gone. His gift to her was a Great Dane. Even though this book has its fair share of sadness, it takes a completely different turn than any other books of his I read with so much intensity!
I try to always end my posts with a question because I love reading your comments. Do you enjoy reading? What kind of books do you typically like to read and who is your favorite author? I hope you enjoyed this post and I look forward to hearing from you!
Take Care, Alyssa
Life can get very difficult and challenging from time to time. We all get caught up between work, family responsibilities, health issues and so many other things that randomly arise.
It is so easy to loose sight of our dreams and passions. Through all of what life throws our way, do you remember what your passions truly are? Do you remember what you dreamed of doing with your life before reality caught up with you? Some people are lucky enough and are doing what they dreamed of but not everyone was that fortunate. I know my dreams never involved what I am doing now.
Since I was young, I always wanted to be a writer. I wanted to go to school for Broadcast Journalism. I did not end up going that route in my life but it might not have been meant to be. I may not have pursued my dream of a career in journalism but that doesn’t mean I forgot how truly passionate I am about writing. I love writing poetry, which truly comes straight from the heart. Writing has helped me get my feelings straight in my mind about the obstacles that dealing with Multiple Sclerosis brings. It is safe to say, writing is my outlet from any struggles I might face.
Through this blog I am actually experiencing my dreams! It is wonderful to be able to choose something to write about and share it with you. I hope you are enjoying reading what I write as much as I am enjoying writing it for you. No matter what your dreams are or how unattainable they seem, you really can do anything you set your mind to. So let me ask you, what are your passions and dreams? What are you doing to pursue these passions and dreams?
Thank you so much for reading this post! If you know of someone that has been battling MS for years or has been recently diagnosed or anyone that is dealing with hardships, please feel free to share this site with them. My goal is to be an encouragement to those that are struggling. I also really do appreciate and enjoy reading your comments, so please let comments to your thoughts on this blog!
Take care, Alyssa